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Brian got his learner’s permit this weekend–a great way to celebrate his 1/2 birthday and 5 years (61 months) free of topical steroids.

November 1, 2018 (61 months TSW) Look who’s driving now!

We started this Topical Steroid Withdrawal (TSW) journey on October 6, 2013 when Brian was ten. See pictures from the early months here. Being an inpatient rehabilitation physical therapist with a wound care background, I started this blog in February 2014 to document the clinician-caregiver and patient perspective of TSW in kids: the signs and symptoms, interventions/treatments, and day-to-day challenges of TSW not reported in research or seen in the clinic. It was my hope that the descriptions of the the horrific, yet fascinating withdrawal process and real-time, real-world picture progressions would help medical professionals recognize and prevent this little-acknowledged adverse effect of topical steroids in kids diagnosed with eczema. It was also a way to commiserate with and encourage other parents with kids going through TSW.

In the midst of the sleepless nights, constant wound care, and 24/7 pain, itching, oozing, and shedding skin, you can feel overwhelmed, helpless, hopeless, and alone. But don’t give up hope; keep the faith. Healing does happen, though not as quickly as we’d like. Getting off a medication that doesn’t work should NOT be this traumatic! How did we survive? By connecting with other TSW warriors and through lots of prayer and gratitude.

Try to find something to be thankful for in every painful movement, in every itchy hour, and in every sleepless night. When in despair, it’s hard to be grateful. But we must. Heck, when I was shaking sheets every day for four years, I gave thanks that I at least had sheets to shake!

If you’re angry, bitter, resentful, or still mourning lost years due to TSW, do something constructive with this negative energy so that your child’s suffering will not be in vain. How? Help prevent TSW in infants and children by raising awareness.

*At the very least, pleasereport your experience with topical steroids to the FDA via MedWatch. Consumers need to report when drugs are ineffective or have side effects. Otherwise, continued safety and efficacy are assumed. If you need help with the report, contact me, and I’ll be happy to walk you through it.

TSW can make you or break you, but we can choose how we respond to past (and current) pain and losses–even the lengthy, horrific Hell-on-Earth journey that is TSW. It’s been a long, hard process, and I’m very proud of my son for choosing to be better rather than bitter. By the grace of God, he’s stronger and more resilient for having gone through it. And so am I.

“You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent. O LORD my God, I will give you thanks forever.” Psalm 30:11-12

In the beginning…November 2013–Seven weeks TSW…

11/28/13 (7 weeks TSW)

Facial edema, oozing, thin skin

and it continued…2016…

January 6, 2016 (27 months TSW) – 10:15 pm-Wet wrapping the hands and wrists with water before bed to try to keep skin hydrated. Note blanchable erythema in fingers.

During the horrific early months and years of TSW, the nights were so dark, long, and lonely, and the days–though welcomed because of the light–were just as draining and frustrating, with no end in sight. Now here we are, four years later, and I’m amazed how fast the time has flown by! Brian started TSW as a 10 year-old fifth grader, and he’s now a 14-year-old 9th grader.

Sept.2013 Before TSW

Sept. 2017 51mo TSW

September 2013 ^^^just before TSW September 2017^^^51 months TSW

How’s he doing? Well, the cold, dry winter atmosphere has resulted in the usual dry skin; the added experience of being a freshman has contributed to increased stress scratching; and cat dander still results in itching, red patches, and allergy symptoms (benadryl to the rescue!). However, the last few TSW signs/symptoms I’ve been monitoring–red sleeves, oozing, elephant skin, profuse skin shedding–have not recurred this time. Now, of course he gets the skin flakes from the dry skin, but it doesn’t result in tablespoons of skin on the sheets in the morning. In fact, my arms are getting flabby because I’m no longer changing and shaking out sheets every day. I’ll exchange flab for TSW any day!

PLEASE REMEMBER: Each person, every BODY is different, in the responses and reactions to medications and in the body’s ability to heal. The original skin condition for which you or your child started topical steroids may re-emerge as the TSW process proceeds and comes to a close. Some kids and adults are fortunate enough to go through TSW and have good-looking skin and perhaps no more eczema at the end. However, this is not everybody. SO, don’t feel like a failure or that “it’s not working for you” just because your skin is not blemish-free and baby-soft at the end of your journey. TSW is a process where the body heals from the accumulated adverse effects of topical steroids, and it can take months to years; It is NOT a cure for eczema or the original skin condition. We have seen in the forums that some people are still having flares or recurrence of TSW symptoms even after 5 years of stopping TS. Why? I don’t know. It needs to be researched, and this is why it’s so important for you to tell your story to doctors, the FDA, the media, etc.

I posted Brian’s most recent progress photos in Pictures. Certainly, the skin is NOT perfect, nor will it probably ever be because dysfunctional skin is in his genes, thanks to me and my hubby. He also probably still has atopic dermatitis–which he chooses to manage without steroids and by not worrying about it. However, he is healthy and active and living life. What more can we ask for our child? 🙂

If you are just starting on this TSW journey, you are not alone. It’s a long, painful, difficult rollercoaster process, but for the health and welfare of your child and/or yourself, withdrawing ineffective topical steroids is essential for the body to heal. In addition, appropriate skin/wound care, nutritional, medical, and psychosocial support are needed to address the signs, symptoms, and sequelae of TSW. Find a knowledgeable or at least open-minded doctor who can support you during this process and communicate with others who understand what you’re going through.

You do have hope for healing!

“I can do all things through Christ who strengthens me.” Philippians 4:13

On October 6, 2013, Brian stopped using topical steroids for his eczema because they were no longer controlling his flares, and his skin and physical condition were getting worse. After surviving the horrific early years and weathering the subsequent storms and calms on this protracted journey, he celebrates his 4th year being free of topical steroids. And what a great way to celebrate: The JDNA has published a Systematic Review on TSW in Children.

Much thanks to the parents who wrote blogs to share their children’s stories with others, and a huge thank you to Dr. Sharon Jacob of the Dermatitis Academy who believed this information should be available to the public in order to help prevent Topical Steroid Addiction (TSA) and Withdrawal (TSW) in infants and children. CLICK to view article. The JDNA (Journal of the Dermatology Nurses’ Association) has made it available FREE for 30 days. Thank you, JDNA!

Whether it be TSW, scleroderma, or other condition, documenting one’s journey via pictures, video, and/or journaling can provide a detailed record and data that cannot be captured in randomized controlled trials or 10-minute clinic visits. You can help others going through experiences similar to yours but also provide valuable qualitative information to researchers and clinicians who are looking for answers, willing to learn, and daring to think outside the (topical steroid) box.

“You made me glad by your deeds O LORD; I sing for joy at the works of your hands.” Psalm 92:4

I hadn’t intended to stay away so long, but a lot has happened since my last post in January. Between baseball tournaments, school, traveling, and taking care of dad, I completed my transitional doctorate in physical therapy from Northeastern University in July and received my direct access certification for VA; my TSW systematic review paper and my capstone paper on scleroderma have been accepted for publication and will be available online soon; two other papers on scleroderma are being considered for publication; we met up with other TSW warriors in Denver; and the world-famous Briana Banos visited and interviewed us for her documentary on TSW, “Preventable: protecting our largest organ.” And, ironically, ALL this never would have happened had it not been for TSW.

Brian started TSW (topical steroid withdrawal) as a 5th grader in the Fall of 2013. Today, he just completed his first month as a 9th grader! So far, he’s juggling a rigorous curriculum and baseball pretty well. Now, the lack of sleep is due to homework and projects, not the incessant itch of TSW. Although his skin is not perfect–no thanks to bad genes–three of the five persistent TSW symptoms I’d been monitoring (elephant skin, red sleeves, feet and ankle flares) did not rear their ugly heads this past spring and summer. Dare I say it and risk jinxing us? Could the TSW be over?

September 5, 2017 First day as a high schooler!

Nahhh…we still have to get through winter and spring. If there’s more snow on the ground than on his sheets and if his flares don’t reoccur, then I’d say we’re done. In the meantime, I’ll continue to gratefully and joyfully watch my sweet little boy grow into a strong young man, made wiser and more resilient by this unenviable journey.

“You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent. O LORD my God, I will give you thanks forever.” Psalm 30:11-12

1/8/17Darth Brian ready to take on the big hill! (wearing sunglasses and breathe-easy ski mask) 1st snow of 2017

Let it snow, let it snow, let it snow!

The start of 2017 finds us in a much better place than this time last year, when Brian was recovering from eczema herpeticum and a TSW flare (see post), and in a much, much better place since he started TSW at the age of 10.

January 6, 2017 marked the 1189th day–3 years and 3 months–since we stopped using topical steroids on Brian for eczema because they had ceased to keep the eczema under control. (Read About it). Despite the long, exceedingly difficult journey and cruel rollercoaster nature of Topical Steroid Withdrawal (TSW), it was the right choice for Brian’s skin and health.

Today, he’s a healthy, thriving 8th grader, and his skin is stronger and in better condition than it was when he was using topical steroids. NOT perfect, but better. After changing and shaking sheets daily for over 2 1/2 years, I enjoyed a 3-month break from this ritual (Aug.-Nov. 2016) when shedding was imperceptible, almost normal. Eczema scratching comes and goes but is no longer debilitating (Log 1/8/17 update). He can sleep at night and wake up for school in the morning with minimal scratching. No more hollering for an ice pack in the middle of the night, though he does ask me to scratch his back for old time’s sake. With the late Fall and Winter weather, I’ve noticed increased dryness and some mild flaking that didn’t start until mid-December. Elephant skin, ooze, and red sleeves have not reared their ugly heads, but there are a few cold months left, and these signs of residual TSW may yet resurface and disrupt our lives once again.

Of course, nothing–especially skin–is perfect, and acceptance of whatever state we’re in brings a sense of peace, but we praise God that our lives no longer revolve 100% around his skin. Right now, we are comfortably managing eczema and are thankful for how far Brian’s come. TSW has shown us we can handle and get through whatever comes our way. And so can you. We are never alone. Stay strong; have hope; keep the faith!

“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior.” Isaiah 43:2-3

Brian’s current Skin/Scratch regimen is similar to that posted 9/16/2016, with changes reflecting whatever his skin requires at the particular time. Goals remain the same, but interventions may change as weather and skin needs change. The following regimen works for Brian. However, people in various stages of TSW may require different treatments, and it is important to test or know what you may or may not react to. Every person is different; you need to find what works best for you.

To support the body/skin health and healing by taking needed vitamins/supplements, monitoring sugar and dairy intake, and getting proper nutrition/hydration, exercise, and sleep, and utilizing stress management and deep breathing techniques

Treatment/Skin Care Routine: At least once daily shower, followed by application of organic coconut oil (face, extremities, trunk). Hot summer months require a “lighter” moisturizer or no moisturizer at all. During winter, can use thicker aquaphor or petroleum jelly for nose, cheeks, ears, and parts exposed to cold.

Sunscreen: Organic, virgin coconut oil

Infection control measures:

Take apple cider vinegar (ACV) bath (10 minute soak) or 20 minutes in microsilk tub bath 1-3 times per week, followed by shower/rinse off, and moisturize with coconut oil or nothing. More frequently if flaring.

Itch/scratch management: Generally 0/5 to 2-/5 scratching. Some short episodes of 3-/5 with fatigue or stress or who knows what. (See log for scratch scale.) Cut and file fingernails short. Deep breathing/relaxation techniques, acupressure points, ice packs, distraction. He will use benadryl liquid as needed but hasn’t used it in months.

Shedding—As in past 2 years, progressive decrease in visible, measurable shedding from end of June to Aug. This year it was June to barely perceptible in Nov. 2016. Restarted slightly measurable shedding (<1/16 teaspoon) around mid-December, from increased skin dryness. (Is this still TSW or “just” eczema? I’m leaning toward eczema))

***Lately Brian’s been able to go without using coconut oil (or any) for moisturizer. He still uses it as sunscreen for face and exposed areas when playing baseball.

Infection control measures:

Apple cider vinegar (ACV) bath (10 minute soak) or 20 minutes in microsilk tub bath 3-5 times per week, followed by shower/rinse off and coconut oil or nothing

Spray sovereign silver, as needed, on any open areas or broken skin.

If all other measures fail and skin/itch worsen, short term oral antibiotics have helped, but thankfully he hasn’t needed them much. In fact, he needed antibiotics more often when he was on topical steroids for his eczema.

Shedding—As in past 2 summers, progressive decrease in visible, measurable shedding from end of June to now (beginning of September). Now shedding is almost imperceptible even when shaking sheets in morning.

We are very thankful that Brian’s skin is no longer limiting his participation in or enjoyment of activities. So, is TSW finally over? Only time will tell. Fall and winter are just around the corner, and we’ll have to wait and see what symptoms arise with the lower humidity and cooler temperatures.

In the meantime, we’ll continue to praise God for his healing touch, live beyond the itch, and “Play ball!”

“You make me glad by your deeds, O LORD; I sing for joy at the works of your hands.”

It’s hard to believe that it’s already September! Summer goes by fast when you spend it traveling from one baseball tournament to another, a family reunion, and two weddings–in 4 different states. Thankfully, we’ve been able to do it all, and Brian has weathered the heat and humidity of summer like a champ.

Brian’s team, the Virginia Breeze Elite, brought home the Cal Ripkin championship trophy and came in the top 8 of 104 teams at the week-long Cooperstown tournament in NY. The stay in the barracks and uniforms washed by the staff challenged his skin, but he at least came out no worse than he went in: 0/5 to 2+/5 ss (scratch scale) and minimal shedding.

Also, he hit his first and 2nd home runs ever that week, contributing 2 to the team’s 44. He batted .611 in 6 pool play games–a fitting end to his “little field” career and a testament to how far he’s come in his TSW journey. Thank you, Jesus!

“But one thing I do: Forgetting what is behind and straining toward what is ahead…you should stand firm in the LORD, dear friends!” Philippians 3:13, 4:1

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“I can do all things through Christ who strengthens me.” Philippians 4:13

Brian’s little patch of eczema grew to include:

incessant itching, spreading redness head to toe, burning, stinging, oozing, flaking, insomnia, and thin, broken skin. Through ITSAN, we found that his worsening condition appears to be stemming from the skin's addiction to the topical steroids used to treat the eczema. The cure: stop topical steroids completely; but the road to recovery is hell on earth. This blog shares our experiences so that as Brian eventually heals, others like him may have hope for healing, too.

DISCLAIMER:

Everything contained in this site is an account of personal experiences, and opinions are solely those of the author. The material contained herein does not constitute medical advice. If you have a medical concern, please contact your medical or healthcare practitioner.